The Allegheny Plateau, sprawling across northern Pennsylvania and beyond, is an ecosystem of forested hills, with land that supports black bears, bald eagles and wandering turkeys, as well as a patchwork of wild herbs: burdock, jewelweed, chamomile and sheep sorrel. Cellphone reception is spotty and gas stations are few and far between. Tucked away among the streams branching from the Cowanesque river is a cluster of small white and tan buildings, including the office of John Keim, an Amish elder and community healer.

In the 1980s, Keim’s young son was scalded by a pot of boiling water, burning off his skin from collarbone to waist. Hospital care was out of the question. Previously, two of Keim’s cousins had been burned in a fire and spent three months in an Indiana hospital. Every week, relatives had sent letters describing how the children screamed as their wounds were cleaned and their bandages changed. Reflecting on that, Keim says, “I just felt it was so inhumane. I would not ever take a child to a burn unit.” He wanted to be autonomous of what he viewed as a brutal system.

Keim and his wife treated their son at home. Initially, they applied a salve of herbs and wrapped the wounds with gauze, but the gauze sunk into the boy’s flesh. They needed a dressing that wouldn’t stick.

In his book Comfort for the Burned and Wounded Keim writes, “I thought of how God created the Earth. I honestly felt He kept the poor in mind while Earth was being created.” He tried to think of things in nature that might help a poor person treat burns. Hitting upon waxy plantain leaves, he gathered a hatful from a nearby field, scalded them so they would be pliable, and used them to wrap his son’s wounds with a layer of herbal salve. Within five days, new skin covered the boy’s body. He had survived.

***

When you think of the Amish, you don’t necessarily think solar panels, but here they are – six of them − on the roof of a horse barn in Holmes County, Ohio, home to the world’s largest Amish settlement. The barn, and the office above it, belong to Marvin Wengerd, who is Amish and serves as a liaison between his community and their non-Amish healthcare providers.

“If you ask the average Amishman on the street, ‘Why don’t you have electricity?’” says Wengerd, “he would say something like, ‘It connects me to the larger world and makes me dependent on the larger world in ways that I find troubling.’” Many further object to television and the internet because they promote vanity and sexual impurities, rather than Biblical values. For his part, Wengerd uses electricity in a limited capacity – for example, to power his office lights and phone. But thanks to the solar panels, which feed a battery, he’s off the grid, not dependent on the government or the oil industry for power.

The Amish and other groups such as Old Order Mennonites refer to themselves as “Plain” because they choose to live a modest lifestyle centred on their faith and separated from the rest of the world. There is some diversity between Plain groups, as each community creates its own rules for everything from clothing to technology use. In general, though, Plain people complete formal education in eighth grade (aged 14), use horse and carriage for daily travel, reject mains electricity, and interact with outsiders in a limited capacity. In most Plain communities, individual families and businesses sell furniture, produce or handmade quilts to the wider population, whom they turn to for services such as banking and emergency taxi rides.

The biggest and most complicated cultural intersection is the modern health care system. Plain people often advocate for more freedom in deciding when to go to a hospital, how to get there, and what interventions will be used. In short, they want greater autonomy.

“Patient autonomy” is a relatively new concept in Western medicine, and its significance depends on your perspective. On the one hand, patients report feeling lost in the system − stripped down to a gown and underwear and pressured to follow doctors’ orders. On the other hand, doctors can face demands for unwarranted treatments. With their unique cultural traditions, Plain communities might point the way towards a better concept of autonomy, one that balances patient choice with patient responsibility. One that we might all learn from.

***

For nearly two-and-a-half millennia, the doctor−patient relationship in Western medicine was defined by doctors’ ethical obligation to act on behalf of their patients. The Hippocratic tradition established what came to be called the “beneficence model,” in which doctors are expected to seek to prevent and treat injury and illness while “doing no harm” to their patients. This tradition provides the ethical basis for everything from prescribing vaccinations to advising patients to wear a helmet while riding a motorcycle.

Following World War II, Western medicine began to shift toward an “autonomy model” of care. In 1966, the New England Journal of Medicine published an article outlining nearly two dozen instances of experiments that had been conducted on humans without their informed consent. This was followed by news of the Tuskegee Syphilis Study, a 40-year research project conducted by the US Public Health Service, in which treatment was withheld from poor African-American men with syphilis. In the 1970s, advances in medical technology also raised a host of new ethical questions. Increasingly, the public wanted a say in matters that were once the purview of doctors and researchers alone.

In 1979, a federal commission released the influential Belmont Report, which put forth three foundational principles for experimentation on human subjects. These were incorporated into subsequent guidelines for clinical practice: autonomy (including respect for the individual’s right to make informed choices), beneficence, and justice (the fair treatment of all). Notably, the Belmont Report did not specify how these principles should be weighed and prioritised against one another.

If a patient wants to decline standard care or use an untested remedy, should a doctor grant this autonomy? And in the case of sick or injured children, who gets to decide: parents or health professionals?

For Plain communities, autonomy in healthcare − and in life more broadly − is deeply tied to personal responsibility. This is perhaps best exemplified by their choice not to have insurance. Rather, when someone gets sick, the church collects alms to help the patient cover expenses. Marvin Wengerd estimates that, collectively, the 30,000 Amish in Holmes County spend $20–30 million a year on healthcare.

“Personal responsibility is still huge among us,” he says, adding that Plain people “think there’s a lot of harm in divorcing the cost from the patient.” He describes communities in which individuals are beholden to their brothers and sisters in the church to make wise health care decisions that don’t cost the community more money than necessary. As a result, Plain communities are highly interested in health education and disease prevention.

***

“Welcome to the clinic,” says Susan Jones, a “twice-retired” nurse with short blond hair and cobalt-blue glasses, who has worked with a community of Old Order Mennonites in southern Kentucky for 20 years. Our van has stopped at the top of a dirt trail adjacent to an unadorned two-storey home with grey siding. Just a few feet from us, a horse stands idly, hitched to a black carriage. This particular group is conservative even by Plain standards, and before my visit Jones gently instructed me to leave my voice recorder in the vehicle.

Health Promotion Day, the reason I’m visiting, includes a one-hour talk on a topic chosen by the Mennonites. Today’s theme: heart arrhythmias. Several health professionals are in attendance, including Steven House, a doctor who treats Plain patients in his primary care clinic in rural Glasgow, Kentucky. They, and roughly a dozen Mennonites, sit in the living room, listening intently while a medical student describes the intricacies of heart anatomy.

Since 2001, Health Promotion Day has been held once a month in the home of a local Mennonite family. The community actively shape the programme by deciding what kind of information and services they want. The aim is to improve the community’s health by providing a one-hour educational session, followed by a primary care clinic where people can receive tests including ear exams and blood pressure readings that might determine whether they need to visit a hospital. Following the talk, House and the medical student field questions. “What percentage of people have a skipped or delayed heartbeat?” asks one Mennonite woman seated on a chair by the home’s wood-burning stove. The second question addresses blood clots and fibrillation. Before long, my notes are a muddle: defibrillators, warfarin, hawthorn berry (which the Mennonites use to regulate heart rate), and pacemakers. I’m lost, but the Mennonites press on. Among the final questions is, “Where is the line when you know you need to see a doctor?”

In a long navy dress and a white bonnet, a Mennonite mother sits on the bed in a small room off the kitchen, describing her family’s encounters with the healthcare system. She describes how once she visited a gastroenterologist seeking a diagnosis, but not treatment. Depending on the case, the community might prefer to spend its money on a farm for a young married couple, rather than on medication or testing, she explains. “We give doctors headaches,” she says, apologetically. “I feel compassion for them.”

House says that non-Plain Americans “are finally figuring out that in our healthcare system resources are finite and everything costs somebody something.” Plain communities, he says, understand that because they pay for their care. In his experience, autonomy to the general American public means, “I get whatever interventions I want or need, and I get however much I want or need, regardless of the cost.” Plain communities on the other hand “are very independent, which is part of their autonomy”. They want to know how diseases develop and what they can do themselves to prevent a disease or its progression.

“They’re like dream diabetic patients,” says House, “because they want to do whatever they can” − whether it’s eating better or exercising more − to improve their condition and lessen their reliance upon medication.

***

After successfully treating his son’s burns, John Keim wanted to help his people. He went on to refine his therapy, eventually creating his own honey-based ointment called Burns and Wounds (B&W), which incorporates plant-based ingredients such as wheat germ oil, aloe vera and myrrh. He settled on wild burdock leaves as his preferred dressing, observing that they help relieve pain.

As word spread, Keim went on to care for hundreds of burn victims over the course of 25 years, eventually training other Plain people so they could work within their communities.

Today, Amish stores sell four-ounce jars of B&W for $7, and community healers collect and store boxes of dried burdock leaves. For non-Plain people accustomed to high medical bills, this low-cost approach to burn care may come as a revelation.

But health professionals have looked askance at this do-it-yourself approach, arguing, for example, that scalding the burdock leaves doesn’t fully sterilise them, theoretically putting the patient at risk of infection. Further, they maintain, in some cases skin grafting is absolutely necessary to save a patient’s life. When Plain families started coming to hospitals requesting treatment for dehydration and shock yet refusing skin grafting, conflict arose.

“There were five doctors who promised I would be behind bars,” says Keim. Roughly 15 years ago, he says, private detectives came to his home to talk with him and “it got into the prosecutor’s office.” Ultimately, the prosecutor decided not to make a case against him.

It wasn’t the first time that Plain communities have come under legal scrutiny. Over the years, some Amish parents have been challenged over the care of their children and even faced criminal charges for their choices. In some of these cases, the medical system has been wrong. In 2013, for example, an Amish family decided to halt their daughter’s chemotherapy, which they believed was killing her. Hospital doctors believed the girl would die without the treatment, so the hospital went to court. When the parents lost their power to make decisions about their daughter’s care, the family fled to Mexico. Two years later, they were all back in Ohio, where the daughter appeared active and healthy, according to a judge who visited the family farm.

Recently, a two-year-old boy was treated with B&W and died at home. His parents received probation after pleading no contest to charges of child endangerment. Wengerd, who was familiar with this case from newspaper reports, suggests that the parents – who had left the Amish and worked without the support of Amish burn dressers – likely didn’t recognize that the situation was “over their head.”

Wengerd and Keim both know that Plain people, like all people, are fallible. This is why they want to coordinate with hospitals. “We don’t want a casualty that puts B&W into a bad light just because we’re ignorant,” says Wengerd. “That’s one of the prime reasons for Pomerene [the local hospital] and their involvement. We need that medical oversight. We’re not opposed to them.”

Keim even acknowledges a role for skin grafting within the B&W protocol, saying, “I would be so happy if we could get together and discuss this. I know, when you’re highly educated, it’s hard to step down. I know pride has something to do with it. And, of course, finances also. That’s a block we’re not able to remove and we’ll have to deal with it.”

***

“A lot of folks think genetic testing is very expensive and can’t be done,” says Erik Puffenberger. “We’ve shown just the opposite.” He’s the lab director of the Clinic for Special Children in Pennsylvania. In a 2012 report in a scientific journal, Puffenberger and colleagues estimated that the pioneering genetics work at the clinic saves local Plain communities $20–25 million a year in medical costs.

The clinic was established as a non-profit in 1989 by Caroline and Holmes Morton. Holmes had graduated from Harvard Medical School and then completed a fellowship at the Children’s Hospital of Philadelphia, where he had helped identify 16 Amish children with a genetic disorder known as GA1, short for glutaric aciduria type 1 (one of the metabolic diseases tested for in newborns using a heel prick).

At the time, GA1 was thought to be extremely rare; however, thanks to Holmes’s work, we now know that while only 1 in 40,000 people among the general Caucasian population have it, it affects 1 in 400 Amish people. Holmes also soon learned that the Mennonite community had high rates of a different genetic disorder, maple syrup urine disease (MSUD, named after the sweet-smelling urine of affected people).

Because Plain communities originate from relatively small populations, they experience a high level of certain diseases not often seen in the wider population. (Conversely, certain diseases that are present in the wider population are virtually nonexistent in Plain communities.)

Against the advice of colleagues and mentors, Holmes and Caroline (whose background was in educational administration) decided to move to Lancaster County, Pennsylvania – home to the world’s oldest Amish settlement – and start a clinic devoted to diagnosing and treating Plain patients with genetic disorders. Holmes insisted on having an on-site lab, where patients could be tested quickly and affordably.

Babies with GA1 and MSUD are unable to break down certain amino acids, the building blocks of proteins. If these amino acids and their by-products build up in the body they can prove fatal. In the past, babies and children with GA1 and MSUD would become sick, and many died. Along the way, Plain communities incurred incredible hospital expenses. Now, thanks to early genetic testing harnessed by the clinic, babies can be screened at birth for the genes that cause these disorders. Once identified, they’re fed a special baby formula that restricts particular amino acids. As these babies develop into children and adults, they must follow a special diet, which allows them to remain healthy.

The clinic’s average patient bill is just $140, and often includes genetic testing that would cost Plain families hundreds if not thousands of dollars elsewhere. This is made possible, in part, by private donations and collaborative projects connecting the clinic with nearby hospitals and universities. Perhaps most surprising is that over a third of the clinic’s yearly $2.8 million operating budget comes from benefit auctions organised and supplied by Plain communities, where everything from quilts to wooden clocks to buggies complete with LED lights is sold.

The clinic itself is located in a field on a piece of land donated by an Amish farmer. The structure was built by Plain people in the traditional way: by hand, using hooks and pulleys. This pine and timber structure houses advanced genetics equipment. It’s a unique mix of old and new, low-tech and high-tech, Plain and non-Plain.

With their big families, good genealogical records, and small founder populations, Plain communities are ideal subjects for identifying genetic variants for common diseases. Researchers at the clinic discover 10–15 new disease-causing variants each year, and they expect this rate to increase. One of their recent discoveries is a rare variant that’s strongly associated with bipolar disorder. Says Puffenberger: “What’s really important here is if you find one gene, then you learn a pathway, and you know that gene interacts with 10 other things, so those other 10 genes also become potential targets” for therapy.

Despite the clinic’s success, there hasn’t been the same degree of uptake of its methods in non-Plain healthcare. “It’s actually a hard sell to the medical–industrial complex in this country that we should be investing all our effort in preventive technology,” says the clinic’s medical director, Kevin Strauss. But he believes that the US healthcare system can’t afford not to put genomic medicine to work in a preventive, cost-effective way.

The clinic has estimated that its costs per outpatient are about a tenth of those for government-backed Medicare and Medicaid (which cover adults as well as children). This is achieved through an innovative medical model that prioritises affordability, prevention and research designed to close the implementation gap – what clinic professionals describe as the gap between the “avalanche” of data acquired through projects like the Human Genome Project and the many patients who have yet to benefit from that data.

***

Despite their focus on prevention and use of community healers, Plain patients do spend large sums on healthcare. The Mennonite woman I met at Health Promotion Day told me that her ten-year-old daughter was recently treated for appendicitis with complications. The community paid just under $10,000, which she described as “fair.” I met another family nearby with a young child who was recently diagnosed and treated for colorectal cancer. The girl spent 15 days in the hospital. The hospital bill alone was $19,000, negotiated down from an original $172,000. The child’s mother praised God for the discount.

Plain communities often negotiate discounts, which hospitals are willing to offer in exchange for payment in full at the time of service. “I will tell you, they are very conscientious about cost. They are very business-savvy and will shop around,” says Eric Hagan, the administrator for the Medical Center at Scottsville, Kentucky. Hagan and Susan Jones have worked to strengthen the hospital’s relationship with the local Mennonites, offering, among other things, a prompt-pay discount.

For Americans with health insurance, it may come as a surprise that hospital costs are negotiable. Indeed, pricing is so murky that most of us don’t know the actual cost of our care. Prompt-pay discounts are rarely advertised, but according to Plain people, they’re quite common. One rural Kentucky hospital offers a 25% discount. In Holmes County, Ohio, Pomerene Hospital offers package deals for self-pay patients. Anyone – Plain or non-Plain – can contact the hospital’s Amish advocate for details.

“We negotiate our bills because we have to fight the cost,” says Wengerd. He and others in the Plain community worry that healthcare prices will escalate so dramatically that they will be forced to abandon their self-pay tradition and instead rely on Medicaid or Obamacare.

In all their talk of personal responsibility, there’s a distinct echo of Republican rhetoric. The Amish don’t vote, says Wengerd, who describes himself as “politically illiterate.” But, he says, “If we voted, we would be Republican.” Because of their faith, Plain people are against abortion and, often, against contraception. They don’t believe in evolution. Men and women are expected to adhere to traditional gender roles. Wengerd recalls that during the 2004 presidential campaign, George W Bush met with Amish from Pennsylvania and Ohio, the two states with the largest Amish populations. He says Bush explained that they were living in swing states and that they could, he paraphrases, “save the nation from the strength of the liberal Democrats who would ruin it.” As a result, some Amish voted for the first and only time in their lives.

But some Plain beliefs differ markedly from those of conservative Republicans. Because of their faith, Plain people believe in “non-resistance”, which is why they don’t support war or bear arms. And in some of their practices – buying and building property for young couples, pooling resources to cover health expenses – an outsider might even call their approach to communal living socialist. After all, no Plain community would expect a family whose child had cancer to face that burden alone.

Long before Obamacare, Plain communities achieved what the rest of America had not: universal healthcare coverage.

***

Coming from an ethic of thriftiness, many Plain people distrust the motives of hospital administrators and even doctors themselves. They believe a profit motive can influence courses of treatment. They are also keenly attuned to unnecessary expenditures within the system. (One Plain woman I spoke with questioned the need for fancy carpets at a nearby clinic.)

“In the Amish world, healthcare is seen as a ministry,” says Wengerd, “which is exactly what healthcare in the [non-Plain] world used to be.” Remember apprenticeships and house calls? The doctor used to be viewed like a minister who sacrificed his life for the patient, but there has been a shift. “The patient now sacrifices his livelihood for the doctor’s wellbeing.”

And yet, increasingly, hospitals have been allowing Plain burn teams to treat their own patients with the B&W burns treatment. They are motivated partly by a desire to reach out to Plain communities so they don’t forgo hospital care. But they are also motivated by results. “We were intrigued by the outcomes,” says Hagan, whose hospital has allowed local Mennonites to use B&W there for about five years.

Pomerene Hospital also allows B&W, having first run a small five-person study to document the healing process. Their findings lent support to what Plain communities had been sharing anecdotally: in patients with first- or second-degree burns, the burdock leaf dressing changes caused little to no pain; none of the burns became infected; and healing time averaged less than 14 days. More recently, the University of Michigan laid the groundwork for a study of how safe and effective B&W is, though results are not expected for several years.

Pomerene does not have a burn unit, so patients with severe burns are transferred to larger centres. Staff at some of these have come into conflict with Plain patients and their caregivers, but others have been willing to work with them. For instance, Holmes County patients currently seek care from Anjay Khandelwal, co-director of MetroHealth Comprehensive Burn Center in Cleveland, Ohio. They don’t allow patients to use B&W in the hospital because it’s “not an approved drug on formulary”, but they will release a patient to the care of Plain burn teams once stabilised.

Khandelwal and colleagues travelled to Holmes County to meet with Amish elders, including Wengerd, who spent several years as a volunteer burn dresser and worked with Pomerene Hospital on its B&W study.

It was here that Khandelwal learned that Plain people don’t sue. When the Amish told him they understand doctors are human and make mistakes, he had to pause to let that sink in. To them, he was not simply a member of the medical establishment, but an autonomous individual doing his best, given the choices and information before him. Khandelwal was profoundly moved: “No one says that to us. No one accepts that.”

Lawsuits aside, allowing B&W to be used can be emotionally difficult for healthcare professionals who have been trained to save lives at all costs. Steven A Kahn, a burns specialist at the University of South Alabama, co-authored a 2013 case report, published in the journal Burns, describing the following encounter:

A 25-year-old Amish man was brought to the hospital after gasoline vapours combusted during a farming accident. The man’s clothing ignited, causing third-degree burns across much of his body. With surgery, his chances of survival were estimated to be 50 per cent. Without surgery, zero. The man’s family insisted he would only want B&W for treatment, though if he were to go into cardiac arrest, he would accept CPR. An ethics consultant determined that the family had provided ample evidence to support their claims. So the hospital team consented to B&W only, and the man died 38 hours after his injury.

“When we have the tools to make someone well but are unable to use them for reasons beyond our control,” says Kahn, “it can make us feel ‘helpless’” – a word used by one of the burn nurses on his team. Still, he believes they made the right choice in allowing the family to be the patient’s voice.

Back in Holmes County, Marvin Wengerd talks about the future of Amish healthcare: “I don’t want to push the medical world beyond their comfort zone,” he says. “We’re not asking them to understand our religious beliefs, but we’re asking for intelligent compromise that says their way of looking at it is not the only way of looking at it.

“We have our own set of values and worldviews that are distinct and just as valid. We don’t always win our cases, but enough of them to make it worth the work.”

Written by Sara Talpos for Mosaic Science, May 30, 2016.

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